Two words I never thought I’d write here. Justin Bieber. 2020 is just full of surprises. The 25 year old Canadian pop star has hit the headlines recently after his Lyme disease diagnosis. Following ample speculation and judgement from the press, rumours ran from drink and drugs to a heavy party lifestyle that had him looking pale and poorly, with blemish-prone skin and unpredictable behaviour.
Justin Bieber announced on his own Instagram page about some of the challenges he has faced, saying that he was suffering from Lyme disease and a “serious case of chronic mono which affected my skin, brain function, energy and overall health”.
Lyme disease is a tricky one. Symptoms can overlap with a variety of conditions and diagnosis isn’t straightforward. While the stats suggest 13% in the UK may be infected, I’d estimate the figure may be greater if testing were more accurate and readily available.
There are a lot of myths and misconceptions around the Lyme. Let’s take a quick look at what it’s all about.
What Is Lyme Disease?
Lyme disease (aka Lyme Borreliosis) is a type of bacterial infection. It’s caused by Borrelia bacterium and is spread by infected ticks.
While some people report knowing when and where they were bitten by a tick, others are none the wiser. It’s also worth noting that the majority of tick bites are harmless. A small number of ticks will carry the bacteria that can infect a human with Lyme disease. They get the bacteria from feeding on mammals or birds that have the bacterium in their bloodstream.
Ticks can be found in many countries, including the UK and particularly in woodlands and grassy areas. You may feel the bite and be aware of it so you can safely remove the tick, but it’s not always felt. It’s important to check your skin after being outdoors and to know the signs and symptoms of Lyme, just in case.
Symptoms of Lyme
The most prolific symptom is the ‘bull’s eye’ rash soon after being bitten. It’s so called as it looks like a bull’s eye on a dartboard, typically seen as a circular red rash that can appear within the first three months of the bite. It can expand in size to around 12 inches in diameter, appearing anywhere on the body. It’s ironic that it’s representative of Lyme disease when a great number of those diagnosed with Lyme don’t experience it.
Early symptoms can be somewhat suggestive of a flu, and can include :
- The ‘Bullseye rash’
- Swollen lymph nodes
- Fever / high temperature and chills
- Joint and muscle pain
Over time, the condition can progress with symptoms like :
- Rashes on other parts of the body
- Joint pain and swelling, arthritis
- Numbness or shooting pains, tinging in the feet or hands
- Irregular heartbeat / heart palpitations
- Neck stiffness
- Inflammation of the tissues covering the spinal cord and brain
- The above inflammation can lead to facial palsy
- Heart and liver problems
- Significant headaches
- Mental confusion
- Sleep disturbances
Testing For Lyme
Lyme is a mysterious one that has no conclusive, definitive test that’s totally accurate for diagnosis. Furthermore, standard tests can’t separate a past disease from an active form. This basically means patients can get false negatives, with underdeveloped antibodies not showing on the test to suggest Lyme infection, or false positives, with antibodies lingering in asymptomatic individuals who’ve already been treated, replicating an active disease.
On the NHS, many patients presenting with unexplained symptoms aren’t unable to get tested; as is common with ‘invisible illnesses’, some may feel they’re being fobbed off by doctors or find that the disease completely overlooked as a possibility. When it is tested for, the test is often less effective in the early stages. When limited to an initial test that may provide a false negative, patients are left between a rock and a hard place, unable to get any further without going elsewhere for testing.
There are usually two stages employed to testing in the UK. The first is for ELISA, or EIA, screening. Only if this test is positive does the screening procedure usually progress on to stage two. This second part involves a laboratory undertaking an immunoblot test to pick out any false positive ELISA results and confirm the presence of Lyme.
These tests don’t always get it right, but there’s been no research to suggest how effective they are or how often they get it wrong. There are a few possible reasons for inaccurate negative results, often linked to the development of antibodies and variations to the autoimmune response. In the case of false positives, these are often found in those with other conditions like rheumatoid arthritis and glandular fever. In the case of false negatives, levels may fluctuate or the antibiodies may be underdeveloped. For this reason, it’s common for doctors or patients to request and require more than one ELISA test.
The irony here is that in the first few weeks, tests may not pick up on Lyme as antibodies haven’t had enough time to develop, and yet the earlier Lyme is detected and treated, the better.
In the UK, Medichecks offer the ELISA test, checking for both Borrelia burgdorferi IgM and Borrelia Burgdorferi IgG. Results are interpreted by a doctor and reported on the users online account for to be viewed, saved or printed off, offering patients an alternative to NHS testing that they can do from home (more information on this later).
There are additional tests that can be undertaken, including the likes of cerebrospinal fluid samples to check antibodies for Borrelia, microscopy and focus floating microscopy, cultures, and polymerase chain reaction studies.
The big problem for many is getting that first test, the ELISA screening, yet it is so vitally important. Sometimes patients may want it repeated but are refused by their doctors. I’ve also known GPs request tests that the lab have simply refused to undertake, undermining their authority. In my opinion, a mixture of scepticism, ignorance, red tape and budget cuts get in the way between patients and diagnosis. As many of us know all too well, when conditions are ‘invisible’ and symptoms can’t necessarily be seen, it can be hard to be believed, let alone taken seriously.
The earlier it’s diagnosed and treated the better as antibiotics are commonly used for the early stages with a 90% success rate. For example, Amoxicillin may be used for 3 weeks, or Doxycycline for 10 days up to 3 weeks. With early disseminated Lyme, when symptoms have started to progress as time goes on, antibiotics are usually either oral or IV depending on the situation. Treatment for Lyme in the later stages is often with IV antibiotics and additional therapies for other symptoms, such as pain relief or joint medications for those who may develop joint issues and arthritis.
Unfortunately, it’s thought that around 10% of those treated continue to experience symptoms, including the likes of mental confusion or memory loss, fatigue and muscle/joint pain, referred to as Post-Treatment Lyme Disease Syndrome.
What Can You Do?
There are a few things you can do to help prevent Lyme or to help in your journey with testing if you’re concerned about a possible infection.
Prevention is one aspect. For example, long sleeves, trousers and socks when you’re outdoors and in woodlands, tick repellant for your skin with eucalyptus / DEET / lemon oil, shower after coming indoors, check your skin, wash and use a hot dryer for your clothes after being in grassy/wooded areas.
Home Blood Testing
Consider home blood testing. Private hospitals are an alternative to NHS GPs but you may be paying a small fortune to see someone and get tested. A home blood test is a convenient, quick and far more cost-effective way of doing it.
Medichecks in the UK have the ELISA test that you can do yourself, or via a local partner clinic, and you can see your results from the comfort of your sofa on your online account. If this comes back positive, you can show the results to your GP or specialist. Medichecks are a popular and preferred provider of home blood tests so your healthcare provider should, in theory, accept the results and act on them as though they were undertaken on the NHS. You’ll likely find they will be glad they haven’t had to do the test themselves and that you’ve saved the NHS money by having it done yourself.
You can use this link & the code INVISME10 for 10% off your order. For more information about their service, check out my review. For those in other countries, it may be worth seeing whether similar is available in your area.
Educate & Persevere
Make a list of any symptoms, including how long you’ve experienced them for. Note any travel, or any instances where you think a tick bite may have happened (if you feel you’re aware of it happening). Present this to your doctor.
If you’re concerned about Lyme, educate yourself and don’t give up. If you’ve been through the mill with tests, acknowledge that it’s possible you may be experiencing another condition that shares symptoms with this disease, but having it ruled out to the best extent possible is important. You know your body. If something isn’t right, remember that your health is worth fighting for.
Have you ever had any experience with Lyme disease? How did you find the process of diagnosis?